Find a Patient Organization

NORD’s Organizational Database (ODB) was established to provide organizations and resources for patients and families affected by rare diseases. Organizations can be included in the ODB if they provide free information and/or services helpful to individuals and families affected by one or more rare diseases; have a website; are non-commercial; are transparent regarding sponsors or sources of funding; and are transparent regarding sources and/or reviewers of medical information provided on their websites and/or publications.

Representatives of patient organizations who are interested in listing an organization in the ODB may write to enugent@rarediseases.org.